Friday, January 3, 2014

i love my go-to-guy

my eyes are almost swollen shut from self-pity, since my self-pity, combined with my rising fever and 9.9 out of 10 ranking on the retarded pain scale, equate to nonsensical tears but my mind is relatively unburdened, thanks to an hour and a half spent with dear, sweet, smart, inventive, superior go-to-guy, my "concierge" doctor that you'll have to shoot me to give up.  yes, i am poor -- and advocate living within one's means -- but i have budgeted for what i consider a compelling necessity, a medical gate-keeper.

anyway, his eyes lit up as he hit on an idea of how to work our peculiar situation and magic with the HMO i am now enrolled in, and with which he is not affiliated.  but the flat fee that i pay each year to "retain" him, well, it retains him.  in dire circumstances, and we are familiar with them, having him around... pays off.

anyway, we went over blood work, we devised a plan to so mesmerize the HMO and the physician i will have to choose in their network, and then...

we decided it was time for me to have a hospital bed with a trapeze. that will make things easier for me, but is one of those moments, you know?  the "oh, yeah, i am ready for disease and disability to reduce me a bit farther." reduce me, constrict me... also, though, on that sliver of pragmatism to which i cling -- it's a change that won't reduce me to tears when i think of how to turn over or sit up or, the ultimate!  when i think of how to both sit up, pivot so as to sit on the side of the bed, then stand and walk to the bathroom.

i went to my doctor's appointment without having brushed my teeth, much less showering.  that caused mucho boo-hooing on my part.  i am nothing if not ridiculous.

it's going to take a while to get the new doctors on board ("you realize they are going to take one look at your history and my summary of the last few years, and either take off running, screaming, or try to reinvent the wheel by ordering every test under the sun, don't you?") and so it will take a while before my carefully put together bedroom gets torn apart.  captain haddock is going to have a cow.  marlinspike hall's beautiful and antiquated décor -- and by "antiquated,"  i mean full of gorgeous and one-of-a-kind antiquities -- has never been so abused.  maybe the haddock corporation will see this as the last straw and put me and my belongings in a pile by the barn, just beyond the moat, and the reach of the drawbridge.  maybe the carnie rehab facility, right now mostly limited to cirque du soleil and local freak show addicts of the finest and most acrobatic kind... will take me in.  i could be a kind of barn mother hen.  and heck, who knows what monumental one-of-a-kind gymnastic moves i can come up with when provided with a hospital bed and a trapeze? eh?

see?  it's all rather too much to take in.

so we're cooking a chicken pizza, and plan on watching something mindless. dr. phil, or one of the multitude of law and orders.  maybe a cold case, or judge judy.

go-to-guy also rapidly and kindly filled out my POLST form, so i am covered -- live and let die!

my mind is jiggling like jello.

© 2013 L. Ryan

Thursday, January 2, 2014

"Cure RSD / CRPS" and Wave the Sage...

This is a low period for me, and for Fred, who is apparently worn out by me and my penchant for self-pity. This I know because last night, after telling him I felt, and please excuse my language, "like a worthless piece of shit," he turned away and said, scoffingly, "pity, pity, pity."

It was the second day in a row that I could not walk, not even from bed to bathroom, without several stops along the way (meaning every 3-5 feet) and a couple of "Hail Mary" grabs at furniture to remain upright.  The pain has been indescribable.  The depression -- describable, as mentioned above, but apparently something I'm not allowed to mention.

The only reason I have not committed suicide is my duty to Fred to leave him enough money that he will survive "in the manner to which he has become accustomed" -- almost drowning in poverty, but not quite.
As soon as I hit the mark, I'm gone.

This morning, I woke screaming.  After sublimating the natural reaction to this level of pain, I did the coffee thing, the care-for-the-animals thing, then the special-care-for-the-animals thing -- known as Dobby Time. Then I managed to get my legs back in the bed, struggled to sit upright, grabbed the computer, and checked to see if my new ACA Marketplace Health Insurance company had responded to my frantic emails.  Nope.

But YouTube notified me of a message from someone, so I surfed in that direction.  It involved a pitch for a CRPS cure, about which I could get the bare-boned information if I paid him $349 for his personal years of research into the disease, and the one (I think he says "one," but maybe it was "several.") research article available about the "cure" he found, and that the rest of the world has been ignoring.

People have become angry with me for reacting with skepticism to the cures they offer.  The group of doctors who wanted me to give myself Ketamine intravenously, at home, unmonitored, for $50 a week.  I could pretty much pick the dosage.  The pain management doctor who wanted to have "some ladies from my church" wrap me in herbs and bandages, and prayer.  The player of the singing crystal bowl who induced bronchospasm with all the sage bundles she burned over me.  The many nurse practitioners of Healing Touch.

Also worth mentioning are the times I was angry at being led along, or not meeting the criteria for treatment. Various clinical trials, a couple that I might have tried but was told by one of my doctors that he'd not treat me any longer if I did.  Implantable devices that I cannot try because of my history of chronic bone infection at sites of implanted prostheses. (Thanks very much, St. Joseph's Hospital of Atlanta and Doctors Eric Carson, Steven Sween, Leslie Kelman, and the nurses in the ICU in May of 2002)

So this morning, I just cannot handle another "gimme, gimme, trust me, trust me..." routine.  Here is the video, for those of you willing to (or desperate enough to) pay for information that is apparently readily available, but which we have all managed to overlook.

I managed a short nap after coffee (an idiosyncratic reaction?) and dreamed, once again, of being trapped in the elevator in one of the medical office buildings at SJHA with the aforementioned unethical Doctor Gods, an elevator that left me gasping because it was filled with the smoke of a sage bundle, and rushing to exit the cage of the elevator as soon as that prison slowed to stop at a floor, any floor, be it the entrance to Hell itself.

So, um, clearly I have issues.  Those doctors represent fraudulent medical treatment, more aptly put as "failure to diagnose and failure to treat," threats (very specific threats), improper treatment, bullying, lying, failure to report a Sentinel Event, and the ruination of my life.  I write that confident that the sentence is completely true and actually soft-peddles their roles in the reality of the first few years I had CRPS. The sage, my inability to breathe or speak?  That represents what I know now was my stupidity and extreme gullibility.  It represents the loss of my life's work as an educator, and the steady pay check with benefits that I enjoyed.

Sage smudging, from Estrella Magick

That ought to provide enough grains of salt for you to wade though... You're welcome.  Excuse the self-pity. Excuse the desire to OD on insulin, fentanyl, methadone, percocet, tizanidine.  Also, kindly overlook my catchy theme song of "Shoot me in the head / Shoot me in the head / Shoot me in the head / I'd be better off dead."  As Dylan said, "I'm a poet /  I know it /  Hope I don't blow it." At least, I *think* that's what he said. He's actually declined in my estimation as I've aged -- I tire of guessing who he wants me to guess him to be this year.  After spending so much time figuring out whom I am, I care less and less about his personas.

Love the music, though.

So here is Cure RSD / CRPS and his video, followed by the details he provided on YouTube, both uploaded yesterday.

Published on Jan 1, 2014In this video, I discuss a cure for RSD / CRPS (not Ketamine!) and my 13 years of chronic pain with the illness during which I saw over 100 doctors and "experts" who knew next to nothing and tried dozens of medications. I suffered from a case described by doctors as "extreme and severe". Finally, after months of desperate research I found the treatment which helps most of the people treated. It is not a crazy-go-it-alone therapy, but is documented in several studies and is carried out at most rheumatological university clinics in one western industrialized nation to cure this disease which by any standard for CRPS are high success rates -- but very, very few sufferers or doctors know about it. Stop taking pills for the pain. Try to get CURED. Watch this video to find out more and how you can get more information on this and possibly end your suffering and/or the suffering of someone you love. Until I have assembled a full information package and posted it for download, for more information, send an email to and title it, "RSD Cure". Please be prepared to make a $349 donation to my PayPal account to cover 13 years of my research into the problem of CRPS. We can also make arrangements for payment of $699 IF you feel the treatment helps you significantly after the fact. The total cost of the treatments at the university clinic were about $1100 - $2300. The treatments take about a week to carry out. A bed and breakfast in the area can be arranged 800 meters from the hospital for about $50 to $65 per night. If you are new to CRPS, this information will help lead you through the maze of information out there and give you proven good odds of returning to your old life with the most thoroughly studied but least well known treatment out there. This will get you a summary of the treatment options, history of the treatment, the info on the most recent study with the improved treatment method which now shows close to an unbelievable 100% double-blind, placebo controlled success rate, where to get it, even email addresses for doctors who perform the treatment, and two locations in Europe which do it. You will also get a list of links for the studies and information you need. I will be happy to have a short personal discussion with you about the problem and the treatment. One of my very good friends with the same disease has seen my rapid improvement, read the studies I collected, and he has already contacted the university I went to and bed and breakfast I stayed at and will soon be going for his own treatment at the hands of the same highly competent doctors who treated me. I am sure in 2 months he will be much, much better. Note: because of copyright laws, I cannot give you the actual studies, but I can give you their full names and tell you where to find them with links in the internet.

Tuesday, December 31, 2013

A Poem for a New Year, Again. Once More. Encore Une Fois.

a Praise Song for the Day

Courtesy of the Academy for American Poets

A Poem for Barack Obama's [first] Presidential Inauguration
by Elizabeth Alexander

Each day we go about our business,
walking past each other, catching each other's
eyes or not, about to speak or speaking.

All about us is noise. All about us is
noise and bramble, thorn and din, each
one of our ancestors on our tongues. 

Someone is stitching up a hem, darning
a hole in a uniform, patching a tire,
repairing the things in need of repair.

Someone is trying to make music somewhere,
with a pair of wooden spoons on an oil drum, 
with cello, boom box, harmonica, voice.

A woman and her son wait for the bus.
A farmer considers the changing sky.
A teacher says, Take out your pencils. Begin.

We encounter each other in words, words
spiny or smooth, whispered or declaimed,
words to consider, reconsider.

We cross dirt roads and highways that mark
the will of some one and then others, who said
I need to see what's on the other side.

I know there's something better down the road.
We need to find a place where we are safe.
We walk into that which we cannot yet see.
Say it plain: that many have died for this day.
Sing the names of the dead who brought us here,
who laid the train tracks, raised the bridges, 

picked the cotton and the lettuce, built
brick by brick the glittering edifices
they would then keep clean and work inside of.

Praise song for struggle, praise song for the day.
Praise song for every hand-lettered sign, 
the figuring-it-out at kitchen tables.

Some live by love thy neighbor as thyself,
others by first do no harm or take no more
than you need. What if the mightiest word is love?

Love beyond marital, filial, national,
love that casts a widening pool of light,
love with no need to pre-empt grievance.

In today's sharp sparkle, this winter air,
any thing can be made, any sentence begun.
On the brink, on the brim, on the cusp,

praise song for walking forward in that light.

2014 was interesting, and we are grateful for having laughed and cried, screamed and muttered our way through it. You know how much I love my two brothers, TW and Grader "The Lumpy" Boob? Both imminently, eminently brilliant (and shiny, too, almost prismatic!), they both snicker and snort at pretty much the same things, in pretty much the same snick-and-snort style. Grader "The Lumpy" Boob, however, in a fit that combined what sounded like a combination of a cough, a hearty spit, a collegiate snick, and a lifelong snuffled snort

January 20, 2009.  President Obama's First Inauguration.

For information on Elizabeth Alexander, click HERE.

Monday, December 30, 2013

pure, unadulterated, worth-a-cry sappy!

  1. 1.
    excessively sentimental; mawkish.
  2. 2.
    (of a plant) containing a lot of sap.

hi, i'm in tremendous pain, nearly caving in to the claim of 9.9/10 on the idiot pain scale.

and constantly beginning, relearning my mindfulness lessons.  restarting relearning in three, two, one...

here is a portion of an entry by a CaringBridge child's mother about her son, whose prognosis is quite poor but whose attitude is awe-inspiring, but not the over-glucosed, rainbowed cotton-candy kind.  he's quite real, which makes that attitude ever more... mindful.

[i "adopt" 4 CaringBridge kids at a time, supposedly.  in actuality, i'm at 8 young ones, each a translation by their journal keeper.  most journal keepers are the mothers, and most are inspirational, themselves.  still, out of respect for the child, i sometimes read through, between, and under the lines to find him or her, and, as you have seen and shortly will again, i read photographs.]

the entry, with identities modified:

The journal picture I've included is of A and his two little brothers, ages 5 and 8.  After A finished chemo (before he spiked a fever), he had to make the long walk over to the cardiology clinic in order to get an echo and ekg.  Neither one of us wanted to make that walk for exams that were needed to close out the LEE011 study for A.  It was just salt in an already open wound.  By the time A finished the heart exams, he was feeling awful.  I asked him to let me hunt down a wheelchair (he had to go back to the oncology clinic to finish fluids) as his 5 year old brother grabbed his IV pole while his 8 year old brother offered to hold his hand.  I don't think I'll ever forget hearing A ask his 8 year old brother, "Hey Bro, can I put my arm around you to help me walk?"  A didn't wait for a wheelchair.  Instead, he slowly walked from one end of the hospital to the other with the help of two brothers who so tenderly love him.

and here is the photo she used to top her journal entry:

the journal keeper readily admits she's a pessimistic realist with a corrective heavenly guiding hand -- quite a combination, and one that i recognize.  i will admit with equal readiness that i would not trade places with her or with A, nor with A's two brothers.

however, she (and i) are working on our attitudes, sometimes with that corrective guidance, sometimes with simple mindfulness -- just sit in it and be -- -- -- -- and so it was that one of the most (personally) beautiful photos i've ever seen was snapped by daisy love merrick's mother, before her last relapse. i bet that was one sassy, swishy walk.  when renaming the photo to match my recollection patterns, i chose "daisy walks away in peace." and so she did.

okay, you tough ones.  you know who you are.  you think you are impervious to my sap, my sappiness. well, friend, gird your loins... because i know for a bona fide fact that daisy love merrick walks this earth, complete with her funky, hippy clothes, and her sassy, swishy walk, and her unique grin (involves the meteoric impact of freckles), as well as her always-remembered mother, father, and sweet brother, and scads of surfing fanatics. but she does not walk alone -- and not with wraith-like holograms of her loved ones -- no!  she walks with treebeard, the eldest of the ent species.  put that in your sap pipe and smoke it.


hat tip to treebeard:

  1. 1.
    excessively sentimental; mawkish.
  2. 2.
    (of a plant) containing a lot of sap.

© 2013 L. Ryan